POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: vaguesbleues on September 01, 2011, 04:04:27 pm
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I'm new to this site, but thought I'd ask for some advice. I'm relatively newly infected. I tested negative in March, but then found out that I might be positive when I volunteered for an HIV Vaccine trial in San Francisco the end of April, and this was confirmed about 3 weeks later (those three weeks, by the way, were probably the worst three months of my life). I decided early on in those 3 weeks that, if I was positive, I wanted to start therapy right away. Not only for the feeling of just "doing something" but also, as it had been caught so early on, I wanted to hit it early and hit it hard, minimizing damage to my immune system and limit viral reservoir formation. However, when I went into the Dr. in May, I was told that my VL was <50. I was not expecting to be undetectable. There was talk of potentially being a viral controller, but wouldn't know for awhile. As viral levels were so low, I opted to wait to start therapy. In June, results were still good. VL was only 345, so slightly higher, but T-cells were even higher as well.
During the last month, however, I've been incredibly sick (fever, headache, tired, etc.) and the Dr. tested me for mono, which did come back positive. However, I had another checkup with my HIV specialist and he informed me that my latest tests showed VL of 50,100, and T-cells of 1155 (19%). He said that mono probably is happening, but that it had most likely been dormant, and after the HIV kinda went crazy, it came out of the shadows. While my T-cell count is much higher still than before, it is a lower % because my immune system is activated so much. Regardless, he suggested that I start medicine, considering I'd wanted to from the beginning.
He suggested two options: go on Atripla OR go on Complera, the latest FDA-approved one-pill once-a-day therapy. I could also take part in a clinical trial to watch my levels over the next few years if on Complera. Furthermore, the clinical trial would cover the cost of therapy and all blood draws/dr visits (however, as I have health insurance, I am only paying co-pays now....so not really that much of a savings). Right now, Atripla looks great, barring the side effects (crazy dreams, feeling "hazy" the next day for awhile). However, Complera also looks great (much fewer side effects, less effect on cholesterol/triglycerides). However, Complera requires taking it with a full meal, which means I'll probably have to pop pills in front of my fellow grad students as I eat most meals at school. Furthermore, there are reports of a slightly higher risk of virological failure and resultant viral resistance to truvada and a few other ARVs. I'm curious for those who have tried Complera or Endurant + Truvada, what your personal stories are. Would you suggest them to treatment naive patients like myself?
Thanks everyone for your advice!
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Sorry to hear that you tested positive. You appear very know knowledgable about the benefits and risks of Complera and Atripla. I am sure that whichever you choose to take will work just fine.
I take Atripla and am also finishing up grad school (this is my last semester and am working on my thesis). If you choose Atripla it shouldn't affect your studies (if that was a concern). Atripla has raised my cholesterol and triglycerides. It is not high enough to start medication for those but it has/is happening, I don't know if Complera has the same effect.
There is one benefit of Atripla over Complera that I didn't see in your post that you may not have thought of. You say you have insurance, which is great because the drugs are pricey. However, Atripla is available as a generic through pharmacies in India. Therefore, if you ever lose your insurance and do not qualify for State assistance, you are able to order generic from India for about $150 a month. That is far cheaper than the close to $2000 it costs in the U.S. Complera is not available as a generic yet in India (since its new).
If you do choose Atripla and have any questions about it feel free to ask. Many, many people on here have taken it and can offer some sound advice.
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I hadn't even thought about that. I've heard about potentially getting drugs through ordering online overseas, but would be concerned about the legality, especially as it appears the govt is cracking down on that even more. I'm in CA, so if funding were an issue, ADAP is an option I suppose. As of yet, CA doesn't have any waiting lists, but who knows with how broke this state is.
Good to know about your side effects with Atripla, as well. I'll be writing up my thesis hopefully in the next 12-18 months (fingers crossed). Ironically enough, I'm studying to be a chemist and have many friends who've gone on into the pharmaceutical/biotech field, which is one option I'm considering.
One reason why I would consider taking Complera is the idea of helping with future treatment through being in the trial. I originally found out I was positive when I went to volunteer for an HIV vaccine trial and they did bloodwork for qualification. I'd not be up for a clinical trial with an experimental drug, but with an FDA-approved drug, at least it has gone through more hurdles.
Thanks!
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Both are equally effective. The key difference may be the increased risk of CNS side effects on Atripla vs the need for a proper meal with Complera.
Good luck with the thesis.
- matt
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Just got off the phone with my Dr. and he indicated that the study using Complera has reached full enrollment status anyways. Looks like I'll be starting Atripla next week once the Genotype Results come back (barring any resistance). I'm just ready to get this ball rolling.
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The genotype test took FOREVER to get back, but I got the results from my Dr. and he indicated that mine is sensitive to all available drugs, so no resistance! I'm going to be starting Atripla tomorrow night, so hopefully all goes well. I've definitely got some apprehension in regards to the CNS side effects, but honestly, I'm just ready to get to feeling better again. The CMV (and probably acute HIV symptoms) I'm having right now are just not fun at all.
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Keep in mind most HIV meds manufacturers offer co-pay assistance for those on insurance who have co-pays. It's very easy to enroll in and to use so the co-pay is basically zero.
Here's info on the one for Atripla:
http://www.atripla.com/copay-assistance.aspx
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Thanks! I'll keep that in mind for when I graduate. I'm currently going to a pharmacy on campus that specializes in HIV care, and they have a nifty deal where they cover all the copays, which for me isn't too much at $25 for a month supply.
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I'm currently going to a pharmacy on campus that specializes in HIV care,
Wow, that's amazing! It's heartening to know there is a university out there that is so forward-thinking. When I went to university, the on-campus health service was absolutely crap.
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I'm currently going to a pharmacy on campus that specializes in HIV care,
That's interesting and kind of strange that an on-campus pharmacy would specialize in HIV? Does that mean that there are enough people who are poz as part of the student body and faculty to warrant such a thing? Just curious.
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Just to put in my 2 cents.....Only reason I am taking Compera instead of Atripla is because the meds in Atripla don't stay in your system very long, so if you are in the habit of forgetting your meds (like me) you run the risk of getting resistant. Also, if you lose you insurance and live in a state with a ADAP waiting list, you can get both Atripla and Complera free from the drug company while you are waiting to get ADAP
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I'm actually a graduate student at Stanford University in the San Francisco Bay Area, and the Stanford Univ. Medical Center is HUUUUUUUGE. There is actually a Stanford Positive Care Clinic, which is an entire clinic with either 3 or 4 doctors that specialize in HIV care. The Pharmacy is on campus, and while they do offer services to everyone (not just students), they have been known for also specializing in HIV treatment. I do count myself incredibly lucky to be in an area that is so incredibly supportive.
Overall, though, I don't know of any other positive students in the student body, although in speaking with the doctors at the clinic early on, they did tell me not to fret, as I'm certainly not the only one from the university dealing with this.
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Just to put in my 2 cents.....Only reason I am taking Compera instead of Atripla is because the meds in Atripla don't stay in your system very long, so if you are in the habit of forgetting your meds (like me) you run the risk of getting resistant. Also, if you lose you insurance and live in a state with a ADAP waiting list, you can get both Atripla and Complera free from the drug company while you are waiting to get ADAP
Hi chassc1974, Keep me posted on your progress, I started Complera Monday so far so good aside from the night sweats.
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Just to say Atripla does not leave the body quickly. Efavirenz, one of the drugs in Atripla takes several days to reach a non-useful concentration when you stop taking it, and the other drugs take at least 1 whole day.
The reason to be very adherent on Atripla is that 1 mutation in HIV confers resistance on efavirenz, but given the length of time efavirenz stays in your body the odd missed dose is usually not important.
- matt
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:)
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Hi chassc1974, Keep me posted on your progress, I started Complera Monday so far so good aside from the night sweats.
Hi Guys, I started Complera 3 months ago as part of the trial for it. Although it has now been approved for sale, the trial I am part of lasts for the next two years so they can track how well it does. I have had some side effects along the way and still have a few. What side effects have you guys had if any? I can share my experience too. Thanks!
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What types of side effects have you had from the Complera? I was under the impression that the benefit of the newer Complera over Atripla was a decreased amount of CNS side effects (vivid dreams, hallucinations, dizziness, etc). I looked into the Complera trial with my doctor, but it turned out the trial in my area had already filled up. I started Atripla 10 days ago now, and while the first few days were pretty crazy (I jokingly would spell it a-TRIP-la as it felt like I must've been taking something like LSD), they've calmed down and are almost gone now.
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Well no weird dreams on yhe Complera at all. One of the side effects that I have is not being able to sleep through the night. Probably 2 out of 7 nights it is a problem. I will wake up tossing and turning and feeling like I have the flu and then by morning it is pretty much ok. However, I am pretty fatigued the whole next day from not getting good sleep. I have been on Complera for a little over 2 months and the side effects really have stayed the same the whole time. Nothing awful but a constant feeling over not having had enough sleep, headaches, and occasionally a slight upset stomach. I would say that I feel "ok" 80% of the time, "off" 10% of the time and "ill" 10% of the time. I have yet to feel 100% like my normal self. Hopefully it will get there! My numbers are good so that is the upside.
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Yeah, I was looking at your numbers in your signature, and it looks like Complera is certainly working out extremely well for you!
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Yes so far so good save for the side effects which come and go. Got my new numbers yesterday and they continue to be good and getting better!
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Hey vagueblues,
Hope things are going well,
Whilst Atripla is convenient over half of people who take it do experience Central Nervous System (CNS) side effects - including dreams, nightmares, broken sleep, hallucinations, depression, mania, suicide, memory proplems, fatigue and anxiety.
It also has poor penetration of the brain - often resulting in residual HIV replication in the CNS (Brain, Spinal Cord and all nerves) - increasing the risk of HAND - HIV Associated Neurocognitive Disorders.
Also it has to be taken at night at least 2 - 3 hours away from food to reduce the risk of these side effects, reducing one's ability to lead a spontaneous lifestyle.
As you are a student I would seriously think twice about Efavirenz as first line treatment.
You might like to consider Truvada + Raltegravir or Kivexa + Raltegravir or Raltegravir, Maraviroc + Nevirapine (depending on your CD4 count - you need to have a count under 400 or 450 to take Nevirapine otherwise you are at risk of side effects of the liver and serious skin rash).
PS - Cool campus, do they have a website.
I am sure that grindr would tell you if there were others on campus!!
Take Care
TB
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Hi there Tempeboy,
Thanks for the advice. I ended up opting for Atripla due to the convenient dosing that wouldn't require a meal (as I eat most of my meals on campus, I didn't want to be popping pills at school). Other than the first few days, I've had no CNS side effects. I had a rash for a few days the second week, but that has also fully cleared up.
And yes, the Stanford Positive Care Clinic is online. They're an excellent clinic. You can see their website at: http://stanfordhospital.org/clinicsmedServices/clinics/positiveCare/
And I agree. While there are definitely quite a few on grindr, no one posts anything related to HIV status unless they're negative. In many ways, Stanford is a "bubble of perfection" and being open about one's HIV status would just lead to a lot of negative reactions. I've only told a few close friends, and even one of those hasn't been that great at keeping my status to himself. Annoying to say the least.
Anyways, thanks for the advice!
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I've only told a few close friends, and even one of those hasn't been that great at keeping my status to himself. Annoying to say the least.
Same here. I found it a violation of my trust. I was much more than just annoyed. Glad you're doing well vaguesbleues. And cool website. :)
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I suppose me saying that I was "annoyed" was a rather diplomatic way of me saying that I basically ripped him a new asshole and we aren't friends anymore. But the friendship had been on the rocks in the past few weeks anyways. This was just the final nail in the coffin. I'm not ashamed of my status, it's just that it's my business and should be on a strict need-to-know basis. And most of my fellow classmates, friends, and all of my family just don't need to know.
There are only two cases in which I feel other have a right (or need) to know: (1) I could be potentially putting you at risk of contracting the virus (i.e. we're going to be having sex, date, whatever) or (2) you are a very close friend and I feel I need your support. If you don't fall into either of these categories, then you aren't going to be told anytime soon.